RFA Ticker, 12/26/16

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No Christmas joy for ME/CFS research at NIH. Only two RFAs were issued last week, and neither were the RFAs promised to us. It appears that the RFAs are coming . . . at some point. Dr. Vicky Whittemore told me by email last week that the continuing budget resolution will not hold up the RFAs. She said, “The funds are committed, so it won’t impact the RFAs.

After ME Action, Terri Wilder and I called on Dr. Collins to keep the promise he made to the ME community, Carol Head of Solve ME/CFS Initiative was also in touch with Dr. Whittemore. Carol told me, “She has confirmed that the NIH is working hard through an intensive process involving many institutes, to get the RFA’s out the door as soon as possible.  Francis Collins is well aware of, and supports, the NIH commitment to the ME/CFS Funding Opportunity Announcements.”

I want to be very clear about something: NIH itself publicly said the RFAs are “expected to be published in December 2016”. That is not a deadline that we set. Nor is it an arbitrary date pulled out of the advocacy hat. NIH stated the RFAs were expected in December. By putting that date in the Federal Register Notice of Intent, NIH made it seem like a sure thing. It’s not as formal or binding as Dr. Whittemore’s statement at the May 2016 CFSAC meeting that the RFAs would be issued in June or July 2016.

It should be obvious that when NIH publishes something in the Federal Register, researchers and others will rely on that information. How many ME researchers are holding off on other grant applications because they are waiting for those RFAs? I do not doubt that Dr. Whittemore and others are working hard to get the RFAs out the door. But obviously, the Institute support is not there. And despite Dr. Collins supporting the commitment to the RFAs, that is clearly not carrying enough weight internally to speed things along.

I believe that an internal statement from Dr. Collins to whatever Institutions or individuals who are holding up the RFAs would go a long way to solving the problem. When people know the Director wants something, that thing usually happens. So, despite everything else on my personal and advocacy plate today, I am emailing Dr. Collins again to remind him of his promise to us. Please join me.

Here are the current cumulative RFA numbers:

FY 2017 FY 2016
RFAs Issued 121 352
Dollars Committed $637,707,563 $2,840,680,617
RFAs for ME/CFS ZERO ZERO

And here is the table for FY 2017 alone:

Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
12/19/16 2 $10,000,000 Zero
12/12/16 28 $125,950,000 Zero
12/5/16 14 $114,800,000 Zero
11/28/16 10 $47,660,000 Zero
11/21/16 6 $42,780,000 Zero
11/14/16 6 $44,350,000 Zero
11/7/16 10 $25,490,563 Zero
10/31/16 4 $26,550,000 Zero
10/24/16 10 $53,400,000 Zero
10/17/16 17 $94,890,000 Zero
10/10/16 1 $28,750,00 Zero
10/3/16 9 $23,087,00 Zero

If you want more background on the RFA Ticker, read the inaugural post.

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Dr. Collins: Keep Your Promise!

This is a call to action. I hope you will join me in demanding that Dr. Collins keep NIH’s promise to the ME community. (Edited to add: this action originated with MEAction. I’m just helping to boost the signal.)

The NIH announced that it would fund ME research by publishing two Funding Opportunity Announcements (FOA) by December 2016, but it is about to miss its first deadline.

On Oct. 21st, the NIH released two Notices of Intent to publish two FOAs for ME/CFS by December 2016. As of today, they have not been released.  The two FOAs are intended to establish collaborative research centers and a data management and coordination center. These FOAs are expected to provide set-aside funding, critical to attracting researchers driven away by a lack of funding.

Join ME activists from around the country to demand that NIH Director, Dr. Francis Collins, keep his promise to publish two FOAs, which will provide funding to researchers investigating ME.

Join us in tweeting, emailing or calling him now before the offices close for the holidays. See sample scripts below. We will not wait any longer for Dr. Collins to act on his word.

Speaking about the lack of FOAs for ME, activist Jennie Spotila said, “More than halfway through December, the promised RFAs for the ME/CFS research consortium and data center have yet to materialize. Will we see them this month? Your guess is as good as mine.”

Terri Wilder, an activist from New York, stated,  “Francis Collins has disappointed the ME community once again with his broken promises. When is the charade going to end?  People with ME demand that the two FOAs be released now! Our lives depend on it.”

Suggested tweets:

@NIHDirector Where are the ME Funding Announcements?  Release them NOW!
@NIHDirector You promised ME Funding.  People are sick. Do your job!
@NIHDirector Release the ME FOAs NOW!
@NIHDirector People are sick. Release the ME FOAs NOW!
@NIHDirector You have had more than a year to keep your promise and issue RFAs for ME. Do it now!

Suggested email:

E-mail Address: execsec1@od.nih.gov

Dear Dr. Collins,

My name is _____ I have been sick with ME for ____ years. I have lost ____  OR

My name is ____ My daughter/son/family member has been sick with ME for ____ years. She/he/they has suffered ___ and lost ___

(Keep it brief so that you can get quickly to the ask below)

I was thrilled to read the NIH’s two Notices of Intent to publish two Funding Opportunity Announcements (FOA) for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) by Dec. 2016.

To date, they have not been released. The FOAs are critical to moving research forward for a disease that is destroying the lives of as many as 2.5 million Americans. We will not accept neglect any longer.

Dr. Collins, we call on you to keep your word. Release the two FOAs now.

In urgency,

Sign your name

Suggested phone call:

Phone Number:  301-496-2433

My name is _____ I have been sick with ME for ____ years. I have lost ____  OR

My name is ____ my daughter/son/family member has been sick with ME for ____ years. She/he/they has suffered ___ and lost ___

I’m calling to leave a message for Dr. Francis Collins. I am asking Dr. Collins to release the Funding Opportunity Announcements that he promised for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) now. The FOAs are critical to moving research forward for a disease that is destroying the lives of as many as 2.5 million Americans. We will not accept neglect any longer.

Posted in Advocacy, Research | Tagged , , , , , , , , , , | 28 Comments

CFSAC Around the Corner

The next meeting of the CFS Advisory Committee will be held Thursday, January 12th, and Friday, January 13th. This is an in-person meeting, and will also be webcast. Note that the Thursday meeting runs from 12 pm to 5pm, while the Friday meeting is a full day.

This will be the first in-person CFSAC meeting since August 2015 (!), and the first meeting organized by the new Designated Federal Officer, Commander Gustavo Seinos. The meeting will NOT be held at the Health & Human Services building. Instead, the meeting will be located at the The Henry J. Kaiser Family Foundation’s Barbara Jordan Conference Center – 1330 G ST, NW – Washington, DC 20005. According to the Federal Register Notice for the meeting, you will still have to register in order to attend in person (registration instructions have not been posted yet). If you are planning to attend in person, remember that the inauguration is only one week later (January 20th), so DC will be more crowded than usual.

Thirty minutes will be allocated for public comment on each day of the meeting. The Federal Register notice has details on providing oral and written comments, but the most important thing to note is that there are deadlines:

  • To sign up for oral comment (in person or by phone), you must request a slot by sending an email to cfsac@hhs.gov by January 5, 2017. The email should contain the speaker’s name and the telephone number at which the speaker can be reached. Oral comment is limited to three minutes, which means no more than twenty people will have the opportunity to speak.
  • To have written comment provided to CFSAC members, you must submit it prior to the meeting. You are limited to five single-space pages. See the Federal Register Notice for more details.

There is no agenda for the meeting yet, but there should be updates from the working groups formed after the May 2016 webinar meeting. The Stakeholder Engagement Working Group (of which I am a member) will present an interim report on its discussions of how to engage community stakeholders in research efforts. A second working group was formed to examine the feasibility of HHS and the Department of Education to collaborate in providing resources for parents of young people with ME/CFS and school nurses, but I have no information on the status of that group. Dr. Jose Montoya agreed to lead a working group to develop a detailed supporting case for a substantial increase in research investment, but I have no information about the status of that group either.

If you need fodder for your public comment, you could take a look at my summary of the May 2016 webinar meeting. A very important issue is the CDC’s refusal to remove PACE-based treatment recommendations from its materials, despite the reduction of PACE to a steaming hot mess after reanalysis of the data using the original protocol. You could also look at my summary of NIH’s research funding in fiscal year 2016 and/or the P2P Federal Partners Meeting report. Building on Terri Wilder’s excellent public comment from the May 2016 meeting, you could talk about #MillionsMissing. The NIH Clinical Care Study has recently revised its protocol and appears to be recruiting, and there is also the Shorter Fiasco to discuss.

Finally, there are some changes to CFSAC that you should review. Due to term limits, CFSAC is down to only seven out of thirteen voting members. I do not know if new members will be appointed prior to this meeting. New ex officios from the Department of Defense and the Veterans Administration have also not yet been named. Finally, the new charter added a new purpose on which CFSAC can make recommendations: “strategies to insure that input from ME/CFS patients and caregivers is incorporated into HHS policy and research.” You can read my summary of all the charter changes in this post.

Despite HHS’s poor record on adopting CFSAC recommendations, and despite how frustrating the meetings themselves can be, CFSAC is still our major public venue to learn about HHS activities and to provide input to HHS on the record. As I’ve said before: if someone offers us a microphone, we have an obligation to speak. No one will speak for us if we refuse to speak for ourselves.

My thanks to Denise Lopez-Majano, whose assistance made it possible for me to write this post.

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RFA Ticker, 12/19/16

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There was a veritable flurry of RFAs last week, with the most issued in any single week since I started tracking last year. But more than halfway through December, the promised RFAs for the ME/CFS research consortium and data center have yet to materialize. Will we see them this month? Your guess is as good as mine.

Here are the current cumulative RFA numbers:

FY 2017 FY 2016
RFAs Issued 119 352
Dollars Committed $627,707,563 $2,840,680,617
RFAs for ME/CFS ZERO ZERO

And here is the table for FY 2017 alone:

Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
12/12/16 28 $125,950,000 Zero
12/5/16 14 $114,800,000 Zero
11/28/16 10 $47,660,000 Zero
11/21/16 6 $42,780,000 Zero
11/14/16 6 $44,350,000 Zero
11/7/16 10 $25,490,563 Zero
10/31/16 4 $26,550,000 Zero
10/24/16 10 $53,400,000 Zero
10/17/16 17 $94,890,000 Zero
10/10/16 1 $28,750,00 Zero
10/3/16 9 $23,087,00 Zero

If you want more background on the RFA Ticker, read the inaugural post.

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , | 4 Comments

RFA Ticker, 12/12/16

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It’s December and the news we’ve all been waiting for – the announcement of ME/CFS RFAs – has not come. But other things of note have been happening. On the RFA front, NIH has passed half a billion dollars in RFAs for the year, with more than $100 million issued just last week.

In news related to ME, the Trans-NIH Working Group has published a few items that we have been awaiting. Dr. Vicky Whittemore’s presentation on NIH research efforts from the October 2016 IACFS/ME meeting has been posted. One item of note is that apart from the upcoming research/date centers RFA, additional RFAs are part 0f the long-term goals for 2018 and beyond (and even then are not promised).

Of greater interest is the NIH Portfolio Analysis for 2007-2015. There is not a lot of detail in the analysis, and this obscures some interesting discrepancies. For example, page 2 presents a chart of research spending for each year. For 2010, the funding listed is about $4 million. But as I’ve previously noted, NIH originally claimed more than $6 million was spent on ME/CFS that year. Once you strip out the unrelated and XMRV research, the number is much closer to $4 million. There is no explanation in the portfolio analysis for where the $4 million figure came from, or when NIH decided to stop counting the unrelated grants. The conclusions drawn from the portfolio analysis (page 6) are disturbing, but not new. There is a very small pool of ME/CFS investigators, few new investigators are coming in, and sample sizes are very small. The single most important way to fix these problems – money – is not acknowledged.

The final news is the long awaited publication of a summary of the federal partners meeting on the P2P report. That meeting is the final step in the Office of Disease Prevention’s P2P process, as I noted in June 2015. The federal partners meeting was held in May 2016, 18 months after the P2P meeting, but we are just getting the report now. There are a lot of things to discuss about this report, but I will just point out one thing for now:

[T]his summary is intended to be a blueprint for the entire ME/CFS community. All stakeholders, including academic researchers, companies, government agencies, patient advocacy groups, and patients and their families, have a shared responsibility for meeting the needs described herein, and thereby improving the lives of people living with ME/CFS.

It is remarkable that the summary is intended to be a blueprint for all of us, when only federal partners participated in creating the blueprint. I see many places in this summary where the perspective of non-federal partners would have greatly improved the comprehensiveness and applicability of its conclusions.

One final note: Dr. Collins is very interested in remaining in his post, if President-elect Trump offers it to him. (hat tip to Denise Lopez-Majano for pointing me to that article)

Here are the current cumulative RFA numbers:

FY 2017 FY 2016
RFAs Issued 91 352
Dollars Committed $501,757,563 $2,840,680,617
RFAs for ME/CFS ZERO ZERO

And here is the table for FY 2017 alone:

Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
12/5/16 14 $114,800,000 Zero
11/28/16 10 $47,660,000 Zero
11/21/16 6 $42,780,000 Zero
11/14/16 6 $44,350,000 Zero
11/7/16 10 $25,490,563 Zero
10/31/16 4 $26,550,000 Zero
10/24/16 10 $53,400,000 Zero
10/17/16 17 $94,890,000 Zero
10/10/16 1 $28,750,00 Zero
10/3/16 9 $23,087,00 Zero

If you want more background on the RFA Ticker, read the inaugural post.

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , , | 9 Comments

The Wall of Nope

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from The Oatmeal

I have reached a new low in life with ME. I call it: The Wall of Nope.

The Wall of Nope is not a physical crash. It’s an inability to deal with obligations and necessary things.

Here’s an example: I’m talking to a friend on the phone, and another call beeps in. I check the voicemail after finishing my call and even though I physically have the energy to return the call, I suddenly hit the Wall of Nope and don’t do it.

On another day, I don’t use my computer, which usually means I can make a simple dinner. But when I walk into the kitchen, I feel an intense desire to never cook again as long as I live.

Reply to an email? Order groceries? Read the news? Check Twitter? Put away clean laundry? Pay a bill? Do something big? Do something small? Nope. Nope. NOPE.

The physical limitations of ME can certainly contribute to hitting the Wall of Nope. But the Wall of Nope is really more of an emotional experience. Or a motivational experience, as in: I have none left.

That is what is new about this. I hit plenty of walls with ME, repeatedly and regularly. But the Wall of Nope is the point where I have lost all capacity for motivation. I’ve never experienced this before. I have always, throughout my life, been able to summon the will and motivation to keep going, to try again, to try differently. If someone needed me, I could dig deep and at least lend an ear. I wanted to be the kind of person who does that. I wanted to be the kind of person who has a tidy house, fulfills social obligations, and stays on top of paperwork.

Nope. Not anymore. Maybe it’s because I have so much to deal with now that I have reached the point where I can’t. And before anyone asks, I know it’s not depression because I have plenty of motivation to do things like practice cello or knit. I will gladly listen to the Elgar Cello Concerto for the eleventybillionth time. Or sit and drink a cup of coffee with enthusiasm until the cows come home.

But for everything else, there is just a point at which I can. not. deal. The errand that needs running? The food that needs cooking? The ringing phone? The advocacy project that needs analysis? Anything beyond the Wall of Nope is just too bad because I can no longer force myself to do the necessary or responsible thing.

Nope.

Nope.

Posted in Commentary, Occupying | Tagged , , , , , , , , , , , , , , , | 44 Comments

RFA Ticker, 12/5/16

tickerThe news in the past week was more about NIH generally, rather than ME specifically. President-elect Trump has nominated Representative Tom Price to be Secretary of HHS. This has touched off a war of words within the medical community, as doctors and medical students protest the American Medical Association’s endorsement of Price despite his opposition to the Affordable Care Act, Medicare, Medicaid, and the Children’s Health Insurance Program.

The 21st Century Cures Act passed the House, and is expected to pass the Senate. The bill includes an additional $4.8 billion to NIH over 10 years, half what an earlier version of the bill included. The money is intended for the cancer moonshot, Precision Medicine Initiative, and the BRAIN Initiative, although the money is not guaranteed (a point blasted by Senator Elizabeth Warren).

A source commented to me that NIH staff are scrambling to get new projects off the ground before money runs out. However, as I noted previously, no new projects can actually be funded under the continuing budget resolution unless the project was funded in FY2016.

Where all of this leaves us is beyond my guessing powers. Given President-elect Trump’s stated intention to cut taxes, it seems safe to say that money will be hard to come by around Washington in the next few years.

Here are the current cumulative numbers:

FY 2017 FY 2016
RFAs Issued 73 352
Dollars Committed $386,957,563 $2,840,680,617
RFAs for ME/CFS ZERO ZERO

And here is the table for FY 2017 alone.

Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
11/28/16 10 $47,660,000 Zero
11/21/16 6 $42,780,000 Zero
11/14/16 6 $44,350,000 Zero
11/7/16 10 $25,490,563 Zero
10/31/16 4 $26,550,000 Zero
10/24/16 10 $53,400,000 Zero
10/17/16 17 $94,890,000 Zero
10/10/16 1 $28,750,00 Zero
10/3/16 9 $23,087,00 Zero

If you want more background on the RFA Ticker, read the inaugural post.

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , | 6 Comments

RFA Ticker, 11/28/16

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A short week due to the Thanksgiving holiday doesn’t slow NIH down, apparently. More than $40 million was committed to RFAs last week.

ME/CFS research didn’t even get the giblets. Will we be more successful in December?

Here are the current cumulative numbers:

FY 2017 FY 2016
RFAs Issued 63 352
Dollars Committed $339,297,563 $2,840,680,617
RFAs for ME/CFS ZERO ZERO

And here is the table for FY 2017 alone.

Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
11/21/16 6 $42,780,000 Zero
11/14/16 6 $44,350,000 Zero
11/7/16 10 $25,490,563 Zero
10/31/16 4 $26,550,000 Zero
10/24/16 10 $53,400,000 Zero
10/17/16 17 $94,890,000 Zero
10/10/16 1 $28,750,00 Zero
10/3/16 9 $23,087,00 Zero

If you want more background on the RFA Ticker, read the inaugural post.

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , | 4 Comments

The Government Attitude Needed

twofaceGovernment/advocate interactions frequently happen on a public stage, where everyone is rightly careful about what they say. Sometimes, though, we can get access to behind the scenes communication. In emails that the authors probably believed would remain private, we can learn what those people really think about something – and it is not a pretty picture.

I have a story like this for you today. Two short emails about ME advocates capture a dismissive, insulting attitude from one person, and a respectful attitude from another. Both of the emails in question were sent by individuals no longer working on ME/CFS, but in light of the Shorter fiasco it is clear that government attitudes are still problematic.

Back in March 2015, I discovered that the NIH Office of Disease Prevention had mishandled public comment on the P2P ME/CFS report. Many comments submitted by advocates and organizations had not been sent to the Panel members. Among the many missing comments was a lengthy document from the CFS Advisory Committee. That document was prepared as part of CFSAC’s official function, and at government expense (to say nothing of the huge amount of time invested by the work group members).

But my discovery meant that this 20 page report (and the comments of dozens of others) was never sent to the Panel by the NIH Office of Disease Prevention. NIH admitted the error, and was forced to delay publication of the final version of the P2P report. Once the report was finally published, I remained very curious about how all of this was handled internally. In October 2015, I filed a FOIA request for communications among the people involved in the P2P meeting. Almost a year later, I received a response. And buried within all the documents were two emails about me.

Here’s what went down: when I discovered NIH’s mishandling of public comments, I emailed the authors of the CFSAC document to notify them of the problem and promised to keep them informed. I thought it was appropriate to copy then-Designated Federal Officer Barbara James.

It turns out that Ms. James forwarded my email to Dr. Susan Maier, who was then the ex officio representative of NIH on CFSAC. Ms. James added personal commentary, saying:

FYI. Don’t they have anything better to do than file FACA and FOIA requests? (emphasis added)

That one sentence embodies everything that is wrong with the way some government employees view ME advocates. It is dismissive and insulting. It demeans legitimate advocacy efforts. It ignores the fact that one of the few ways we can hold the government accountable is through investigating and exposing government failures. This is also one of the baldest examples of ableism that I have seen in a government email.

In addition to insulting me, Ms. James failed to acknowledge that my FOIA request had uncovered that CFSAC’s comments had been lost. My discovery helped her do her job, because it was her responsibility as DFO to submit those comments to NIH. But instead, Ms. James could only complain that I had nothing better to do.

Let me be clear: The only reason I’m doing any advocacy in the first place is because my government has completely and utterly failed to adequately address the ME crisis. I would much rather be working or raising kids or doing the thousands of other things I am unlikely to ever be able to do. Advocacy work is important, and believe me, I don’t do it for entertainment or lack of other things I want to do. Like many others, I do advocacy at great personal cost and sacrifice.

Ms. James’s comment is an example of a negative mindset about people with ME: we are a nuisance; we complain too much; we’re crazy; we’re demanding; we have small lives with nothing better to do.

That is an attitude we do not need. It is an attitude that interferes with the government’s public health mission and that impedes our ability to succeed in advocacy. ME advocates can point to decades of dismissal and disdain by government employees. We can unroll a long laundry list of examples that were not helpful or constructive, and that sometimes cross the line into outright prejudice and stereotypes.

It’s not the end of the story, though, because Dr. Maier replied to Ms. James. Dr. Maier did not always endear herself to the ME community, but this email was completely appropriate and accurate:

Thanks Barbara. They are concerned that their voices are not being heard. I understand. (emphasis added)

THIS is the attitude we need. Dr. Maier simply acknowledged that we have legitimate grounds to fear that our voices are not being heard. That’s it. She didn’t go any further than extending a little human decency and empathy, but it makes a difference to me to know that she did so.

Emails and attitudes like Ms. James’s are the norm for people with ME. We get that kind of thing from our healthcare providers, our social circles, and our government. Ms. James retired from HHS, but attitudes like this remain.

Dr. Maier is also no longer working with CFSAC, but the attitude in her email is exactly what we need from government employees. We need to be heard as contributors to solving the ME crisis. Our input is valuable, and we are worthy of respect. Even when we use adversarial tactics, it’s usually not personal. We’re performing a necessary function in the system, just as they are.

These conflicting attitudes remain relevant today. The recent invitation of Dr. Shorter to NIH was not only a major blunder, but also exposed dangerous thinking among some at NIH. The replies from Dr. Koroshetz and the Trans-NIH ME/CFS Working Group were respectful but missed part of the reasoning for our protests. Dr. Shorter’s talk still went ahead as scheduled.

But on the other hand, the teleconferences with the community have given us closer contact with NIH officials than I can recall us ever having had before. Several NIH scientists attended the IACFS/ME meeting and gave presentations. Dr. Vicky Whittemore asked CFSAC to make recommendations on how agencies can better engage the ME/CFS community in setting priorities for research.* I have encountered several NIH employees who have been both respectful and incredibly responsive.

Government agencies may appear monolithic, but they are not. The offensive, callous attitude embodied in Ms. James’s email about me (as well as NIH’s invitation to Dr. Shorter) is unwelcome and unproductive. Given the government’s history on ME, it is natural to expect all government employees to treat us badly.

But governments are made up of people, and people are not identical. Dr. Maier’s email to Ms. James is one example of empathy and understanding. Long-time advocates will recall Dr. Wanda Jones, who was respected and appreciated by the ME community. Dr. Whittemore gives every indication of following in her footsteps.

The emails exchanged by Ms. James and Dr. Maier use a total of four sentences, but reveal much about the kinds of attitudes we do and do not need from government employees. We need less disparagement and less ableism. We need more empathy and more respect.

People with ME will be best served when everyone comes together as equals to address this crisis. Bad attitudes will always hinder progress.

 

*Full disclosure: I am serving on the CFSAC’s working group on this topic.

Posted in Advocacy, Commentary, Occupying | Tagged , , , , , , , , , , , , , | 17 Comments

RFA Ticker, 11/21/16

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The big news (apart from the election, of course) is that Carol Head and Dr. Zaher Nahle of the Solve ME/CFS Initiative had a brief meeting with Dr. Francis Collins, Director of NIH. SMCI reported:

Dr. Collins could not offer insight as to the future of his position at the NIH but agreed that the vital progress ME/CFS has made thus far must be protected and bolstered. Dr. Collins acknowledged the past disservice and delay in regard to ME/CFS and committed to continue to support progress moving forward.

And that is the big question. Will Dr. Collins continue as Director? This would certainly be to our advantage since he has promised to support ME research. Or will a new Director come in, along with the new administration? That would mean we go back to square -1, having to build our case and convince a new (possibly less receptive) audience.

In a time of great uncertainty, we must press forward. We cannot lose a single minute or waste a single opportunity. After all, HIV/AIDS activists succeeded in transforming the landscape of federal policy and funding on that disease during the Reagan administration. President Reagan was seven years in to his term of office when he finally gave a speech on AIDS. If the HIV/AIDS activists were able to change the political calculus on that crisis, then surely we can continue to make progress in this one.

Here are the current cumulative numbers:

FY 2017 FY 2016
RFAs Issued 57 352
Dollars Committed $296,517,563 $2,840,680,617
RFAs for ME/CFS ZERO ZERO

And here is the table for FY 2017 alone.

Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
11/14/16 6 $44,350,000 Zero
11/7/16 10 $25,490,563 Zero
10/31/16 4 $26,550,000 Zero
10/24/16 10 $53,400,000 Zero
10/17/16 17 $94,890,000 Zero
10/10/16 1 $28,750,00 Zero
10/3/16 9 $23,087,00 Zero

If you want more background on the RFA Ticker, read the inaugural post.

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , | 7 Comments